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Topic: My Friend O2 (Advise and question) (Read 1836 times) |
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FramCire
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My Friend O2 (Advise and question)
« on: Jan 5th, 2006, 11:47pm » |
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For all those who are new to CH or new to the board, please make sure you read the "oxygen info" tab on the left hand side of this site. It has completely changed my life.
Ever since I got the right kind of mask and make sure I am getting the right amount of O2 for the right amount of time it has helped my battles with my headaches tremendously. I still fear sleeping, but the pain levels and such are significantly reduced and life with CH is much much much easier to live with.
Thank you everyone for your advise in that other thread, i just thought that it might be important to let new people know how important the right kind of mask and proper use of O2 can be. The repsirtory therapist had no idea which kind of mask I should use.
Also, for those who know about Clustermasx (is that the name), you may want to reply here and let people (like me) know about that. My birthday is coming up and my mother may be buying it for my birthday because even though the normal mask is working fairly well, she wants me to have the best of everything. I am going to be 34, so I should buy this for myself, but I guess being the youngest child, sometimes my mom still wants to be mommy.
Anyway, I am interested in peoples experience with the Clustermasx (sp?) before I get it. (or my mom does). The regular non-rebreather mask gets my HAs to a low kip number. Should I get the other mask?
Thanks again for your replies, in advance.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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E-Double
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Re: My Friend O2 (Advise and question)
« Reply #1 on: Jan 5th, 2006, 11:51pm » |
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Happy Birthday!
GET THE MASK!!!!!!!!!!! for yourself ASAP and have mommy buy you another one for the road!
Forget knocking them back and making them more tolerable. This thing works as well as meds! It aborts an attack in a few minutes. It even aborts the hits that are full blown out of sleep!
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1130556735
I love it!
It made O2 not only work again (I became non-responsive to it) but it made it work better than originally.
Regards,
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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zanychef
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i'm busting with a masx cant really go wrong can i
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Re: My Friend O2 (Advise and question)
« Reply #2 on: Jan 6th, 2006, 2:16am » |
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cant beat a clustermasx 
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plenty of time to sleep now me headaches aint too bad
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Beastfodder
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O2 and clusterbusters - naturally
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Re: My Friend O2 (Advise and question)
« Reply #3 on: Jan 6th, 2006, 4:26pm » |
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Do try and get a clustermasx.
Thing is there's been a load of (ongoing) discussion about the thing here.
Bottom line for me is I've got one & it's brilliant.
However the thing hasn't been licensed for the use it's being put to - meaning in principle if something bad happens Ben the supplier (and CH sufferer I believe) could get his ass sued.
Because of this I'm not sure - however a little research on clustermasx threads will I think show some urls for alternative hi-flow masks - if that is you can't get the proper thing.
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O2 and clusterbusters - naturally
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Mr. Happy
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Re: My Friend O2 (Advise and question)
« Reply #4 on: Jan 6th, 2006, 11:13pm » |
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on Jan 5th, 2006, 11:47pm, FramCire wrote:| My birthday is coming up and my mother may be buying it for my birthday because even though the normal mask is working fairly well, she wants me to have the best of everything. I am going to be 34, so I should buy this for myself, but I guess being the youngest child, sometimes my mom still wants to be mommy. |
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You can trust all of the people some of the time, and some of the people all of the time.....but you can always trust Mom.
Let Mom get you the Clustermasx ASAP. It's the best thing she could possibly give you for your birthday (other than a hooker.)
If you thought O2 worked great so far, just wait'll you try it thru one of these filthy masx. Not only will you're opinion of O2 increase, but it'll give your Mom a great sense of satisfaction in decreasing your pain with no chance of STD's.
Mom always knows best.
RJ
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May those who don't want any
Have memories of never getting any.
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FramCire
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Re: My Friend O2 (Advise and question)
« Reply #5 on: Jan 7th, 2006, 1:23am » |
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thanks for all the advise. Although the person who suggested the mask was second to getting a hooker kinda tainted the idea for me (I am happily married).... I think I'll let that one pass on by.
Anyway, my only concern is that a few people have suggested that O2 stopped working for them after a while. Will using a more pure O2 source make this more likely?
O2 with a regular non-rebreather works decent. If there is a chance the Masx would make me more likely to become O2 resistant, that would be my only concern.
Yes, I am a paranoid who reads WAY too much about stuff and maybe O2 resistance is very rare, but I don't want to be in a situation where I don't have something that works for me.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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E-Double
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Re: My Friend O2 (Advise and question)
« Reply #6 on: Jan 7th, 2006, 1:28am » |
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On the contrary......
When I tell you that it is aborting an attack quicker than imitrex did that should mean something!!!!!!
IT IS AMAZING!!!!!!!!!!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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FramCire
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Life like a froward child must be humored a little
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Re: My Friend O2 (Advise and question)
« Reply #7 on: Jan 7th, 2006, 1:50am » |
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E-Double: My concern is that I have read a few stories of people saying O2 worked for a while (long time) and then stopped working almost like their bodies developed a tolerance for it like what can happen with certain drugs and the effecacy (sp?) can wear off.
This is why some drugs can only be used sparingly and in certain doses and such.
This is my concern.
Maybe I am not making sense here because my vocabulary is very poor at this time of the night during a cycle (well at any time during a cycle)
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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zwibbs/Scott
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Re: My Friend O2 (Advise and question)
« Reply #8 on: Jan 7th, 2006, 2:24am » |
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You should make an appointment with a "good" neurologist to discuss your concerns. The advise from this board is fantastic, and o2 is wonderful......BUT.........a neuro will handle any and all questions about oxygen, and you'll then have total confidence in what they say. Oxygen worked for me, but I was nearing the end of my cycle. If everybody here tells you it stopped a major attack--you can bank on it !!!
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Jonny
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Re: My Friend O2 (Advise and question)
« Reply #9 on: Jan 7th, 2006, 2:44pm » |
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02?
15 years ago I was given a welding shop size tank (Huge) and a shit mask....instructions were "Just breath", nice huh?......It didnt do shit.
I showed up here over six years ago and had 02 beatin into me (Not literaly )
Ueli, Ted and others kept on me to try it again "The right way" ....seeing that I did own a welding shop I gave it a go.......I went from 4/6 HA's a day to 3 a week.
It blew my mind!.....so much that I had my gas guy start building regulators for people that could not get a script for 02, welding 02 is just as good.....Ive mailed out (At my cost) 18 regs to date.
Clustermasx?
Ben sent me two prototyps a few years ago.......Out fucking standing!!!!!........Your nuts if you dont have one.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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FramCire
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Re: My Friend O2 (Advise and question)
« Reply #10 on: Jan 7th, 2006, 5:01pm » |
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on Jan 7th, 2006, 2:24am, zwibbs/Scott wrote:| You should make an appointment with a "good" neurologist to discuss your concerns. The advise from this board is fantastic, and o2 is wonderful......BUT.........a neuro will handle any and all questions about oxygen, and you'll then have total confidence in what they say. Oxygen worked for me, but I was nearing the end of my cycle. If everybody here tells you it stopped a major attack--you can bank on it !!! |
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Maybe I'm an idiot, but I almost trust the people here more than most muerologists. I am going to be getting a refferal to the "Headache Care Center" in Springfield Missouri next week. I don't know when I will get in to see them or how good they are but hey, headaches are their specialty, so what the heck.
Anyway, I guess I'll have to get me a Clustmasx or 2 soon. I keep hoping this episode will end one of these days and I can forget about CH for another 10 months or so.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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Melissa
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Re: My Friend O2 (Advise and question)
« Reply #11 on: Jan 7th, 2006, 5:22pm » |
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on Jan 7th, 2006, 5:01pm, FramCire wrote:
Maybe I'm an idiot, but I almost trust the people here more than most muerologists. I am going to be getting a refferal to the "Headache Care Center" in Springfield Missouri next week. I don't know when I will get in to see them or how good they are but hey, headaches are their specialty, so what the heck.
Anyway, I guess I'll have to get me a Clustmasx or 2 soon. I keep hoping this episode will end one of these days and I can forget about CH for another 10 months or so.
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In my 2000 cycle, O2 stopped working 1/2 way through. In my 2003 cycle, O2 didn't work at all. I wasn't even going to bother with O2 this cycle, but after a lot of suffering and putting my doubts aside, I had my doc rx 2 O2 tanks with non-rebreather masks. Needless to say it took 20min to knock out an attack. I then broke down and purchased a Clustermasx and received it about a week or two ago, and I can kill them in as little as 4 miniutes!!! The difference is so huge, that there is no way in hell I'd ever not be without O2 during a cycle ever again!!!
If you want to read about what I've gone through this cycle, I have a thread in the Meds section titled "Starting Kudzu again...".
You keep hoping the episode will end one of these days, but what about now? Don't you owe it to yourself to have some quality of life while IN cycle?
Think about it...
mel
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| « Last Edit: Jan 7th, 2006, 5:23pm by Melissa » |
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marlinsfan
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Re: My Friend O2 (Advise and question)
« Reply #13 on: Jan 12th, 2006, 4:45pm » |
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They are in the UK, and probably just returning from holidays this week. maybe the mailbox is full.
Send them $25 via paypal or credit card. If you have questions about the mask, ask here. There are lots of experts on it here.
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Roxy
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Re: My Friend O2 (Advise and question)
« Reply #15 on: Jan 12th, 2006, 7:08pm » |
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This is what my first mask looked like:
Needless to say, the clustermax works much better.
One word of advice, I've used 02 since almost the day I was diagnosed. I've become resistant to many triptans, but not 02. And I've used it a hell of a lot more than the triptans.
Don't worry about something like that.......use it, and if it stops working (which I don't think it will), worry about that when it happens.
Roxy
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I used to have a handle on life....but it broke.
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marlinsfan
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Re: My Friend O2 (Advise and question)
« Reply #16 on: Jan 12th, 2006, 7:18pm » |
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on Jan 12th, 2006, 6:46pm, crazydog wrote:| Does the $25 cover shipping fees to the US? |
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Yes. I paid $25 delivered to my door.
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